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Andy Oram is an editor at O'Reilly Media, a highly respected book publisher and technology information provider. An employee of the company since 1992, Andy currently specializes in open source, software engineering, and health IT, but his editorial output has ranged from a legal guide covering intellectual property to a graphic novel about teenage hackers. His articles have appeared often on EMR & EHR and other blogs in the health IT space.
Andy also writes often for O'Reilly's Radar site (http://oreilly.com/) and other publications on policy issues related to the Internet and on trends affecting technical innovation and its effects on society. Print publications where his work has appeared include The Economist, Communications of the ACM, Copyright World, the Journal of Information Technology & Politics, Vanguardia Dossier, and Internet Law and Business. Conferences where he has presented talks include O'Reilly's Open Source Convention, FISL (Brazil), FOSDEM, and DebConf.

All reformers in health care know what the field needs to do; I laid out four years ago the consensus about patient-supplied data, widespread analytics, mHealth, and transparency. Our frustration comes in when trying to crack the current hide-bound system open and create change. Recent interventions by US Republicans to repeal the Affordable Care Act, whatever their effects on costs and insurance coverage, offer no promise to affect workflows or treatment. So this article suggests three potential scenarios where reform could succeed, along with a vision of what will happen if none of them take hold.

Patients Forge Their Own Way Forward

In the first scenario, a tiny group of selfer-trackers, athletes, and empowered patients start a movement that ultimately wins over hundreds of millions of individuals.

These scattered enthusiasts, driven to overcome debilitating health problems or achieve extraordinary athletic feats, start to pursue self-tracking with fanaticism. Consumer or medical-grade devices provide them with ongoing data about their progress, and an open source platform such as HIE of One gives them a personal health record (PHR).

They also take charge of their interactions with the health care system. They find that most primary care providers aren’t interested in the data and concerns they bring, or don’t have time to process those data and concerns in the depth they need, or don’t know how to. Therefore, while preserving standard relationships with primary care providers and specialists where appropriate, the self-trackers seek out doctors and other providers to provide consultation about their personal health programs. A small number of providers recognize an opportunity here and set up practices around these consultations. The interactions look quite different from standard doctor visits. The customers, instead of just submitting themselves to examination and gathering advice, steer the conversation and set the goals.

Power relationships between doctors and customers also start to change. Although traditional patients can (and often do) walk away and effectively boycott a practice with which they’re not comfortable, the new customers use this power to set the agenda and to sort out the health care providers they find beneficial.

The turning point probably comes when someone–probabaly a research facility, because it puts customer needs above business models–invents a cheap, comfortable, and easy-to-use device that meets the basic needs for monitoring and transmitting vital signs. It may rest on the waist or some other place where it can be hidden, so that there is no stigma to wearing it constantly and no reason to reject its use on fashion grounds. A beneficent foundation invests several million dollars to make the device available to schoolchildren or some other needy population, and suddenly the community of empowered patients leaps from a miniscule pool to a mainstream phenomenon.

Researchers join the community in search of subjects for their experiments, and patients offer data to the researchers in the hope of speeding up cures. At all times, the data is under control of the subjects, who help to direct research based on their needs. Analytics start to turn up findings that inform clinical decision support.

I haven’t mentioned the collection of genetic information so far, because it requires more expensive processes, presents numerous privacy risks, and isn’t usually useful–normally it tells you that you have something like a 2% risk of getting a disease instead of the general population’s 1% risk. But where genetic testing is useful, it can definitely fit into this system.

Ultimately, the market for consultants that started out tiny becomes the dominant model for delivering health care. Specialists and hospitals are brought in only when their specific contributions are needed. The savings that result bring down insurance costs for everyone. And chronic disease goes way down as people get quick feedback on their lifestyle choices.

Government Puts Its Foot Down

After a decade of cajoling health care providers to share data and adopt a fee-for-outcome model, only to witness progress at a snail’s pace, the federal government decides to try a totally different tack in this second scenario. As part of the Precision Medicine initiative (which originally planned to sign up one million volunteers), and leveraging the ever-growing database of Medicare data, the Office of the National Coordinator sets up a consortium and runs analytics on top of its data to be shared with all legitimate researchers. The government also promises to share the benefits of the analytics with anyone in the world who adds their data to the database.

The goals of the analytics are multi-faceted, combining fraud checks, a search for cures, and everyday recommendations about improving interventions to save money and treat patients earlier in the disease cycle. The notorious 17-year gap between research findings and widespread implementation shrinks radically. Now, best practices are available to any patient who chooses to participate.

As with the personal health records in the previous scenario, the government database in this scenario creates a research platform of unprecedented size, both in the number of records and the variety of participating researchers.

To further expand the power of the analytics, the government demands exponentially greater transparency not just in medical settings but in all things that make us sick: the food we eat (reversing the rulings that protect manufacturers and restaurants from revealing what they’re putting in our bodies), the air and water that surrounds us, the effects of climate change (a major public health issue, spreading scourges such as mosquito-borne diseases and heat exhaustion), disparities in food and exercise options among neighborhoods, and more. Public awareness leads to improvements in health that lagged for decades.

In the next section of this article, I’ll present a third scenario that achieves reform from a different angle.

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